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Hypereosinophilic syndrome (HES)

Blood Cancers & Disorders | Last Active: May 14 4:41am | Replies (59)

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@tiffanyq

Teen daughter has HES. Eosiniophils 1500, fatigue. unknown cause?
My teen daughter has HES. Her eosinophils have been elevated for over a year. She has had bone marrow biopsy and ECHO, they are unable to find the cause. We tried a course of steroids and it only decreased her eosinophils to 1100. Would appreciate any info.

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Replies to "Teen daughter has HES. Eosiniophils 1500, fatigue. unknown cause? My teen daughter has HES. Her eosinophils..."

Good morning, @tiffanyq This must be so frustrating and alarming for you and your daughter to not be finding any relief for her high eosinophil levels.
Eosinophils are a type of white blood cell that protect your body from parasites, allergens, foreign bacteria and outside organisms.

There can be a number of disorders which raise the body’s eosinophil level, including certain infections, allergies and reactions to medications.

I’m sure you’ve been researching trying to find answers. Below are a couple of links to information about Hypereosinophilic Syndrome which help explain the condition and potential causes:
https://www.mayoclinic.org/diseases-conditions/hypereosinophilic-syndrome/diagnosis-treatment/drc-20352856
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https://www.healthline.com/health/hypereosinophilic-syndrome
There are three main types of Hypereosinophilic Syndrome so finding the correct diagnosis will be crucial in getting the proper treatment for your daughter. There are other medications for treatment beyond prednisone.
What are her symptoms? What specialists has she seen?

Hi @tiffanyq, I add my welcome. I moved your question about treating hypereosinophilic syndrome (HES) to this existing discussion:
- Hypereosinophilic syndrome (HES) https://connect.mayoclinic.org/discussion/hypereosinophilic-syndrome/

I did this so you can read previous posts and connect with other members like @vkartsona @zenk @montyg @browser3 and others.

Hi @tiffanyq. Have u done exams for parasites? Especially one called toxocara. That was the first thing they searched for while my daughter had very high eosinophils. Unfortunately she was negative on that. But definetely u should do all the parasites exams before u proceed with other exams. This is what they all told us. My daughter’s case was really hard. Her exams showed 79% eosinophils in 140k white cells count. She was treated with imatinib for 4 years. Wishing u all the best!